1. < Neuroendocrine Tumors (NETs)

Neuroendocrine tumor and carcinoid tumor

Posted by makebadaniels73 @makebadaniels73, Jun 2, 2023

On March 3, 2023, My Gastroenterologist found a neuroendocrine tumor as well as a carcinoid tumor in the lesser curve of My stomach. This is all so new to me and I was just wanting ANY information and positive support along the way.

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penguino4739 | @penguino4739 | Jun 12, 2023
In reply to @makebadaniels73 "Thank u so much for ur kind words. My insurance denied my NET Scan so I'm..." + (show)
@makebadaniels73

Thank u so much for ur kind words. My insurance denied my NET Scan so I'm appealing that to get my scan done. I reside in Charlotte , NC. I had chasing wat was wrong with Me for over 10yrs and finally got the right Dr. to send me to a Gastroenterologist and this is where I'm at today. I've been educating myself on this rare form and that's why I came here. To search for answers, to be in support of and to see which direction to go with this. It's like I was just told this in March 3rd and have been trying to get a NET Scan since then??? I'm wondering if I should search for another Gastroenterologist or is this normal for wait time..??!

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Again, sorry you are going through this at a time when you need answers sooner than later. If you don't have someone to help guide you through the process I would talk to the hospital/clinic ombudsmen & see if they can get some answers for you. If you have any doctor friends or know someone who knows a doctor, I might ask them for suggestions. If it's someone at the place where you're getting treatment that would be great, but oncologists for NET are not a huge group, so hopefully once you get set up, things will go more smoothly. I would then start to email, call, wait there in person to find out what is the hold-up? (Is it the insurance?) Then I would call and email the person or department in charge of patient services & tell them what your experience is & how will they help you. I would not let too many days go by without making some sort of inquiry--the squeaky wheel gets the grease, so now's the time to squeak up a storm! Best of luck, hope this helps some.

REPLY
dbamos1945 | @dbamos1945 | Jun 13, 2023

There is treatment that controls NET tumors and in some cases can shrink tumor size. If you are unable to access NET specialist like many of us - make appt for local oncologist… taking your test results, contact medical info and hopefully your evaluation will lead to receiving treatment (form of Laneorotide shot that is repeated every 28 days). I receive Samotuline Depot shot for last 8 months and MRI shows my cancer is stable. This shot has relatively little side-effects and not considered a chemotherapy.
I urge YOU to see oncologist sooner than later!

REPLY
1 reply
makebadaniels73 | @makebadaniels73 | Jun 13, 2023
In reply to @dbamos1945 "There is treatment that controls NET tumors and in some cases can shrink tumor size. If..." + (show)
@dbamos1945

There is treatment that controls NET tumors and in some cases can shrink tumor size. If you are unable to access NET specialist like many of us - make appt for local oncologist… taking your test results, contact medical info and hopefully your evaluation will lead to receiving treatment (form of Laneorotide shot that is repeated every 28 days). I receive Samotuline Depot shot for last 8 months and MRI shows my cancer is stable. This shot has relatively little side-effects and not considered a chemotherapy.
I urge YOU to see oncologist sooner than later!

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Thank u so much! I will definitely look into this. In the meantime my Gastroenterologist has ordered an EUS...keep me in Prayers as I will everyone here.

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dbamos1945 | @dbamos1945 | Jun 13, 2023

makebadaniels73: Hi! My diagnosis was possible from biopsy taken during a repeat endoscopy; so I would suggest you urge your doc to take biopsies of everything suspicious. If you haven’t had an endoscopy or EUS (with ultrasound) you are out during procedure with probably no sore throat. It is a short procedure and I hope you get the result report in timely manner! My good thoughts are with you!

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1 reply
makebadaniels73 | @makebadaniels73 | Jun 14, 2023
In reply to @dbamos1945 "makebadaniels73: Hi! My diagnosis was possible from biopsy taken during a repeat endoscopy; so I would..." + (show)
@dbamos1945

makebadaniels73: Hi! My diagnosis was possible from biopsy taken during a repeat endoscopy; so I would suggest you urge your doc to take biopsies of everything suspicious. If you haven’t had an endoscopy or EUS (with ultrasound) you are out during procedure with probably no sore throat. It is a short procedure and I hope you get the result report in timely manner! My good thoughts are with you!

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Hello..thank u I have had an Upper Endoscopy and just got a referral for an EUS...thank u so kindly.

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